When your recovery is uncertain, it can be a difficult time. Scary even because you don’t know how much functionality you’ll get back and how long that will take. That might make for uncomfortable reading.
I am mentioning this up front to acknowledge your or your loved one’s reality and that it’s normal to feel uncomfortable about it, even scared. I know, I’ve been there myself. It can be an anxiety-ridden place. But there is hope.
It may feel like you have no control, but you do have some. It’s important to recognise that. And then exercise the control you do have, however much that is. I’ve come up with ten things you can do when your recovery is uncertain.When your prognosis for #recovery is uncertain, it doesn’t mean you can do nothing. There are 10 things you can do to take some control back. Read more here #seriousillness #seriousinjury Tell a friend
This blog is actually for a friend who is in this position right now
I’ll call him Michael. And I have his permission to use him as a case study. Michael sustained a serious spinal cord injury a few months ago. High up the spinal cord as well so his whole body is affected. Initially he was paralysed but regained functioning and can walk. The doctor said he is very lucky.
Michael had an operation so the disk doesn’t impinge on the spinal cord. It is to prevent becoming Michael becoming paralysed from the neck down again due to the damaged disc if he were to ever have another accident.
As Michael can walk the impact of his spinal cord injury is invisible. The most difficult symptoms he has are fatigue and chronic neuropathic pain. When we talked about me using his situation as a case study for a blog, I asked him what is the one question he would like me to answer. He asked,
‘How long do I have to wait until I recover and go back to the way I was?’
That’s a big question. The doctor’s prognosis figures into this. What did the doctor say to Michael regarding his recovery?
Recovery after a spinal cord injury, many neurological illnesses, and other illnesses such as cancer, are not straightforward. Also, you and your body hardly go back to way you were before the illness or injury.
You can be anywhere on this continuum of recovery.
- No recovery and you live with the impact whatever that is. This may include permanent disability where a lot of functionality is affected.
- Some recovery with residual symptoms that impact how you live your life to a moderate degree. It may include a moderate degree of permanent disability.
- Good recovery with minor residual symptoms that do not have a great impact on how you live your life
- Complete recovery
And the recovery process can take time. For example, with the neurological illness Transverse Myelitis, the neurologists speak of a 2 year window of recovery. With some conditions like Multiple Sclerosis, you will have a periods of recovery after a flare-ups or relapses (depending on the variant of MS you have).
Michael is very aware of this and had this discussion with his doctor, so this blog isn’t the first time he is hearing this. So I move onto the first thing to do when your recovery is uncertain. These 10 things you can do are applicable to anyone in this situation. Some of them may not be easy to do, but they are important. And they aren’t an exhaustive list.
1. Learn to live with the uncertainty
Learning to live with the uncertainty of not knowing how long recovery will take and the degree to which your symptoms and issues will improve is important. When you can learn to live well enough with the uncertainty, you then free up your energy to focus on your rehabilitation and things that will give you meaning and joy. This can help the recovery process.
Linked to this is the relationship you have with your illness or injury. If it’s a fraught relationship full of fighting and anger, it can be harder to live with the uncertainty. I’ve seen people end up fighting it and as a consequence they end up not looking after themselves physically or emotionally very well. This is stress inducing which can exacerbate symptoms.
2. Take control of what you can
This is your physiotherapy (or exercise if you are not having physiotherapy), your medication and appointments, your diet, your mental health, your relationships, your return to work if you are working or volunteering, your hobbies and leisure time, finances, life purpose and values, and your physical environment.
This is all in your remit to control and influence, making any adaptations and changes to help you live well with the impact of your illness or injury. The next point suggests how you can take control.
3. Develop a rehabilitation plan when your recovery is uncertain
These days I don’t often hear of people leaving hospital with a care or rehabilitation plan. But there is nothing stopping you from creating your own plan.
Developing your own plan could be a blog in itself so I’m going to quickly describe how to do this. For each category listed in point 2 ask yourself these questions for a start:
- What do I need to do to do my physiotherapy for example, or manage my medication and appointments, diet, etc.? What changes do I need to make?
- What are my goals for my physiotherapy, returning to work, etc. Ensure these goals are concrete, i.e. based on behaviours and have timescales attached to them.
- What questions do I have? Is there a person I know who has been through this or a charity who can help?
- What specifically will I need support with? For example, you may need someone to help you with your physiotherapy.
As part of this, it can be useful to keep a diary of your symptoms (particularly if they fluctuate), progress you are making, when you plateau or have an exacerbation of symptoms, etc. This can help you identify:
- Patterns and themes in your recovery such as what may trigger an exacerbation of symptoms. This can help you manage the impact of the illness or injury.
- Questions you have for your doctor and to prepare for your appointments.
- Any improvements you have made over the longer term which can be motivating to look at from time to time.
4. Adopt a learning mindset
Given recovery from serious health issues are rarely straightforward, things won’t go to plan. Adopting a learning mindset will make navigating this unknown terrain a lot easier and lessen the negative energy spent when things are not going well.
Michael said it best, ‘Live and learn.’ He overdid it in the garden the other day and realised it the next day. He now knows his current limits for gardening activity.
So when you do something for the first time, or you are increasing your activity levels, or something doesn’t go well, ask yourself:
- What did I learn from this?
- What do I need to do, think or feel differently next time (if anything)?
Make a note of it if you need to.
5. Develop your willingness muscle to adapt
Develop your willingness to adapt and ask for help. Change can sometimes be hard. Particularly in the context of an illness or injury where things may be harder to do, take longer to do, and/or you’ve lost valued levels of functioning and activities. This can include letting go of pre-illness or injury expectations of yourself and developing new ones.
I am not saying you squash down any sadness associated with this, not at all. Do acknowledge that because that is a psychologically healthy thing to do. You can do this without unpacking and living there.
Developing your willingness muscle to adapt and change, gives you more options. When you have options, you have choice and more control. This can also help reduce black and white thinking where you only have either this option or that option (and neither may be what you want).
6. Ask for and say yes to help
Asking for help is important as you may want help but people may not be able to spot that, or they worry about imposing.
Also, asking for and accepting help does not mean you are weak or a burden. Many times, the person has offered their help and is only too happy to help you. You get to where you want to be faster and helping you makes them feel good too. Win-win.
Sometimes though, as I mentioned at the end of this blog, you want to say no to help because you want to check what you can do now, if there has been some recovery. That is fine. If someone has offered to help you and you say no, let them know why.
7. It’s especially important to talk to your family when your recovery is uncertain
This is REALLY IMPORTANT. Don’t assume that they don’t want to be bothered. Don’t assume they know what it is like for you. Ask them what they want to know and the questions they have.
If you keep things bottled up out of fear of upsetting them or making things more difficult for them, you inadvertently create the conditions for people to come up with their own stories of what is going on with you. And they may not be correct.
Those in a caring or supporting role are also affected by what has happened to you. They are affected differently, but the impact can be just as great.
Acknowledge what they have had to do. Chances are they have had to take on some of the stuff you did. Listen to them about how they are affected. Put feelings of guilt to one side and worries about not being able to ‘repay’ your spouse/partner/children/parents. Recognition in the form of a genuine thank you, a hug, a kiss, your time and attention is the most valuable ‘payment’.
Getting your children involved
Children often want to help so if there is some way they can get involved in helping you with your physiotherapy for example, doing household chores, or even in helping you set your rehabilitation goals, that can go very far in helping the children know they matter. It can also help build their confidence levels if they take on new chores and are recognised for making a valuable contribution.
Regarding your children helping to set your rehabilitation goals, ask them what they would like to be able to do with you and make a plan as to what you need to do together to do that activity. Realising you may need to make adaptations to how you do the activity and even the type of activities you do together.
It is usually in these stressful times where pre-existing and sometimes unhelpful family dynamics can get in the way and cause issues. When the pre-existing dynamics come into play, you are both doing something that contributes to this dynamic so this isn’t about blaming one or the other person for what they’ve done or not done. Hence why I am emphasising the importance of talking with your family when your recovery is uncertain.
8. Limit comparison to others and your pre-illness/injured self
Comparison to others and your pre-illness/injured self can be a recipe for keeping yourself stuck. It is a natural thing to do. Just be mindful of it, how often you do it and how any comparison is making you feel.
I recommend you compare yourself to yesterday. That way your comparison is more fair and realistic.
9. Hold your wants lightly
When your recovery is uncertain and you’ve been dealing with a lot of unwanted changed, of course you may want to recover 100%. You want to be your pre-illness/injured self again. You want less pain, fatigue or whatever symptoms you are experiencing.
That is all a given.
Just be mindful to hold those wants lightly. If you fiercely cling to them, you can inadvertently limit your ability to adapt. You can end up continuing to fight your situation and remain stuck. Chances are that is not what you want for yourself.Remember to hold your wants lightly for a cure or to get 100% better. If you fiercely cling to these wants, you can inadvertently limit your ability to adapt, and remain stuck. Chances are that is not what you want for yourself… Tell a friend
10. Maintain a well-tuned sense of humour when your recovery is uncertain
There are times we laugh at our situation, but it is more of a gallows laugh, laughing at our misfortune. We do that from time to time but that is not what I am recommending here. Because gallows humour can be a subtle discount of ourselves and our situation.
I am talking about a well-tuned sense of humour. Sometimes with people you know well you or they may find the humorous side to an an aspect of your condition where it is truly funny to all those involved including you.
Also, seek to laugh just for a laugh. It may be banter with family, friends or colleagues. It may reading a book or watching a movie. It may be following a comedian or funny social media account. (I recommend @TheMERL and the libraries and museums on Twitter for that.)
I recommend a belly laugh a day because it brings joy into your life. Put that in your rehabilitation plan.
When you look at all of the above, there is actually quite a bit you can do when your recovery is uncertain.
What’s it like for you?
What on the list above most resonates with you? What isn’t on this list that you think could be there? Share your thoughts or questions in the comments below or alternatively email them to me (contact form in sidebar).
If you are living with a serious health issue or are caring for someone who is, and would like support in dealing with any of the issues mentioned in this blog, then have a look at how we can work together and get in touch for a free no obligation consultation.
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© Copyright Barbara Babcock 2019